Memoirs of a little bird

2.5 Years TSW

There are times, more and more as the days pass, that I wish I was better. Not only for myself, but for public acknowledgment that this truly exists. I am one week shy of being home from shooting the documentary, Preventable: Protecting Our Largest Organ, and it would have been so much grander to do all of this while being healed. I feel this pressure of being in the public eye and I just want to SHOW people there is hope, not tell them there is hope.

I’ve been graced these past 49 days to meet so many wonderful and different people going through this horrendous condition. They are from all walks of life, various stages of healing, and have powerful stories. No one is alike, except for one thing: topical steroids are what made their world turn upside down.

I am very passionate about this project and will do my best to honor and portray everyones stories with respect and integrity while editing over the course of these next months. This is a heavy task, one that will take time, so I hope everyone will understand that this is not going to be finished for some time.

As for my own health update, it has been very up and down. The traveling has greeted me with many personal challenges, both physical and mental. My dryness is increased, my exhaustion is quicker to surface, and for the past 5 days I’ve had a horrific stomach ache that comes on whenever I eat food. I’ve never experienced it before, but it might be my body’s way of telling me it’s time to go home soon. Also, in my forearms crease and my neck, I’m getting that weird, ooze type smell, like it’s under the dryness, and if I itch, you can smell it. However, I have tried pushing through in each city around the world because I wish to take it all in. This is a once in a lifetime opportunity and I don’t want to waste it.

Click to enlarge photos

Below: Getting over a sunburn I got on the 4th of July from walking around at the beach getting footage

Above: All the shedding that still happens. Yup. Can’t wait until that’s over.

Above: I was a complete mess this day with my skin, but I pushed through and went to have some aerial time!

Above: My eyelids, near mid July, just got tired of the heat and were giving me such grief.

Above: The little cuts in my neck are so sensitive. It feels like tons of paper cuts.

Here are some fun ones though!!

So, that’s my update. Again, click on the pictures if you wish to see them enlarged. I hope everyone is keeping those chins up xx You are being so brave.

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3 thoughts on “2.5 Years TSW”

Briana, I wish you are better too. Have been praying for you. The videos you shot are so meaningful and will be helpful to others. Everyone’s body recovers in a different speed. The extra pressure is not helping you to heal. I have been doing UVB phototherapy since March. I am itching and shedding a lot less. My neck, hands and ankles are still the worse. I still itch everyday in these areas but I think it is helping me. The down side is time, I had to go 3 times a week and the treatment I am doing is only 4 min 45 sec. Also, the UVB will age your skin and the skin turns very dark. I am sure the weather helps too cause summer is less dry in my area. May be you can consider going to UVB phototherapy to see if it is helpful for you. All the best to you!

Just want you to know I’m at 2.5 years now too. SOO much better, but still fighting flares on my hands and a random toe, and eczema like I had as a kid on my legs again. It’s sucks not being 100% yet; I stumbled on your post after googling “2.5 years TSW”. I just wanted to see if I was the only one who was still on the struggle bus this far into it. Thanks for giving me solace and showing me it’s still normal for my shedding skin to look like a blizzard! Ha

I found it too painful to write/research ab TSW when I was in the thick of it, but I do appreciate those of you who have!